One of the Five

This week has been trying for both mom and me; but I know no matter how hard it has been for me, it has been harder on her. I had a week, a taste of what my mother deals with on a daily basis; but she will never be able to leave it behind. If you would like to get just an inkling of knowledge on what it is like to have Alzheimer's this video may help.  Living with -Alzheimer's   After this week I realize it won't be long before my mother is to the same level the woman in the video is.

My mother has the ringing in her ears. Motion can confuse her.  Noises startle her to the point of panic. She often can't follow simple directions even if it is only giving her two choices.  She wants help, she needs it simple. She appreciates when it's done for her, as long as she does not know it was done for her.

An example of this is... I reordered her medication today. I did so without telling her. When we arrived at the store she was instantly frustrated when I told her it was the end of the month and time to get the meds.  She argued she did not know what she took. I suggested she give her name and have them look it up. The clerk smiled and said, yes, it's ready. With a big smile she said, "Oh it is, well great!" So relieved she did not have to do more to get her meds. I then watched her wander the store looking confused picking something here or there to take home. I noticed as long as she is a bit engaged in conversation she does better. But it was hard for me to know what to help her to choose. Earlier, we were at What-a-burger and it took suggesting what to get to help her to make a decision for herself. Hints, suggestions, a slow pace is the best way to help her. Speaking slow and calmly.  Speaking quickly is only confusing and if you have to repeat what you said it is difficult for her to keep up.

I learned quickly this week it is best to handle her by leading questions and suggestions. But this can be very scary because she is so suggestive. I do my best to help her to feel in control. That too can be very difficult to manage.

I am not even sure what this post is about.  I guess just how to help her best. I'm hoping her friends read it and utilize the knowledge. I know she is well loved and they only want what is best.

The best thing for my mom is assisted living and NOT driving. I was able to get her car away from her this week. A God thing for sure! It was acting up when I got to her home and just was not worth fixing.  But with all the changes she went through this week; I could not take the apartment too.  Her friends can help suggest and share their good stories about assisted living.  Not push or make her feel helpless. I would like the move to be her choice if possible.

I have heard Sterling House is amazing and they even have activities. My mother is familiar with Heritage Oaks. They are both on my call list for next week. I still need Power of Attorney over her affairs to ensure she not make any terrible irrevocable choices. It will be a long 17 days for me. If she mentions going to Edward Jones, redirect her and change the subject.  The last thing she needs is a new car.

I write this as I sit across from her going through a lifetime of memories in a box. Hard to believe a lifetime a accomplishments could fit in a box; but honestly it has taken a trash bin to hold them all this week. She has picked out a precious few wonderful memories to keep. However, most of them are about my dad. Everything else I am taking to my home.

I can tell who my mom's friends are; they are the precious few whom have reached out to me this week. And I love them for it. She certainly has those whom care and have expressed their concerns; but these few I will hold in my heart because they love my mom.

My Dad once told me something that became clearer to me as I grew older. "Don't be surprised if you get to my age and can only count your real friends on one hand, and at least two of them are family." I think this holds true for my mom. She is loved by many, no doubt.  Almost too loved considering how many feel somehow they are betraying her. But what they don't really understand is she is much happier when she is being helped.

Well, I'm signing off now. I need to try and work out a schedule and a call list. But I want you ladies, and you know whom you are, to know I appreciate you more than words can express. Thank you for being one of her five.  Call me if you need me.

I'd Never Done It

My mother's mother, my mamaw, was one of my favorite people in the whole world.  She had a sharp clear memory up until the end, when she died at age 102. And,  with only an elementary education she helped her husband make a fine life for their family. Mamaw, did have some health issues and suffered many strokes in her senior years. I have a distinct clear recollection of my Mamaw, after one such episode when she was 100 years young saying; "If I'd known what it was like to get old, I'd never done it." My mother shocked to hear such a statement from her mother quickly corrected; "Well, you would to."  She admitted later in the car she found the statement unlike Mamaw and concerning.

My Mamaw was a devout Christian baptized in 1914 by brother McCarty in Berry Tx when she was 12 years old. I often head her speak a about how she was ready for God to call her home; but I never once heard her speak so longingly for that journey as she did that day. She spoke of Grandy, her husband whom I had never met; and I could tell even after more than 50 years she desperately missed him. She pondered why God leaves some to wait and why he takes others so early.  Never once had I heard her question the ways of God in all my life.  She quickly self corrected herself saying He was smarter than she and surely had His reasons. She did add that she wished her job here was done, that she was ready to go home.

I think I learned more from watching my Mamaw grow old gracefully than from anyone in my life.  She did things in her time and before she had to. I learned about the concept of spending down and how to be independent with no car. I learned that aspirin, Pepto Bismal, and Milk of Magnesia could cure anything.  I learned that you are never too old to learn something new. She took art classes, basket weaving and was always working on a new Afghan.  Even after countless strokes my Mamaw would work her way well by making laps in the building she lived in even if it was one foot at a time in a wheel chair.

My favorite memories are of her putting Cheetoes in the oven to "freshen" then up when they had gone stale,  Blue Bell Ice Cream and Big Red floats, the miles we walked too Woolsworth without a car to pick up groceries and the way her garage smelled like turpentine from cleaning out her brushes.  I met Mamaw in 1976 when I was 6 years old.  She walked through life with graceful determination.

I desperately wish she were here now to help her daughter navigate these hard days and accept the help she needs. I wish I had been a better student and paid more attention. Then maybe, just maybe I would be as much help to my mom as she was to her own. We are getting there, but I just don't feel prepared enough to do this job I have been given justice.

We miss you Mamaw.

Letting Go...

I have been trying to figure out what I  would write about tonight.

I am heart broken for my mom. I feel like I came in and pulled a rug out from under her.  When I arrived Saturday she had a storage unit full of memories. She had a car. She had a post office box she had proudly been the occupant of for over 55 years. She had control over her bank account and her doctor, and as of today, all of that is gone.

I know as sure as I am breathing all of this was necessary. I know her neighbors are safer.  I know she is safer. But I don't want this sort of power over her life. I love my mom and would give anything to have the woman who passed her Statistics class with all "A's" and graduated with honors in my life. She is still my mother and I love her dearly.

I know God has been in control this week. I have done all I can to help her come to terms with her situation. She still lives in a lovely community and is  going to need her friends desperately.  Her home is clean and as long as she takes her meds and can manage her refrigerator; I am mostly ok with her staying where she lives. I just pray when I leave on Saturday she does not just fall apart with all of the changes.

I hated her giving up the mail box though. Honestly, I think it hurt me as much as it did her.  I followed her to the car with tears in my eyes. Helping a person you love with Alzheimer's is like pulling off a bandaid a millimeter at a time and stopping to dab on  alcohol  in between each tug. It's not fair to her or the ones whom love her.   

I just wish there were a kinder way to grow old than to loose the faculties one acquires in the first three fourths of their life.

Anyway, I am closing off tonight with a heavy heart. I desperately want to be home with my family but just can't abandon my mom yet. I hope tomorrow she is more accepting of not having a car. She mentioned leasing one and I just changed the subject.  I hope her friends will not encourage this. Her car had scrapes and bumps and damage on every corner, before it went in to the shop and found it was not worth fixing. The last thing she needs now is a new car.

Pray for my mom if you are reading this. Pray for me that I can do what us needed and best for her.

Cracking Eggs

Letting it go...

I awoke this morning with a prayer in my mind asking God to help me choose my words carefully and to guide them to be what my mom needs to hear.

I can tell she is trying to let go of the power to control everything. She has started asking for advice and letting me do the things she is struggling with. She has mentioned a number of times how she paid the bills and my dad took care of everything else, and how it just worked.

She allowed me to call her Medicare supplement insurance company today. That was huge! She called the attorney herself and that was monumental.

The one thing she is not ready to let go of is her car; but her car is sick conveniently enough, so she may have no choice. It is in the shop and we have been told it is the engine.  She somehow has it in her head she met the man and just did not like him.  But she hasn't. She made it up in her head to try and explain how she is feeling.

I hate she will loose that privilege to drive; but I think it it is safer for all if she gives up the keys. All I have to do is think about fixing dinner tonight to realize exactly how bad things have gotten.

I decided to fix bacon and eggs because I had seen them in the fridge.  Well, let's just say that was an experience I don't soon want to relive.  Eggs that the expectation date was 9 months ago, discovered only after I cracked one open; and bacon that was frozen but was also expired.  I went through everything in her fridge and the pantry and settled on soup for dinner.   The trip to the trash bin held multiple packages of bacon, cheese, cans  of rotel and green beans; some dated to expire in 2014.  Hundreds of dollars of wasted food. No wonder she is loosing weight. She appreciated me going through it and getting rid of it.

While I was cleaning out the fridge mom asked if I would call her once a week and ask her to go through and throw out the mail and newspapers.   I giggled and told her I would call twice a week for the mail and the refrigerator.

She thought that was a good idea. 

Needless to say Monday was super hard; but every day gets a bit easier for both of us. I know  things will work out the way they are suppose to.  And I think God is guiding us both right now.

I love my mom and I am thankful she is letting me help.

"You Can't Take It With You"

My uncle use to say, you never see  hearse pulling a trailer.  You just can't take it with you.

Needless to say; I have said that phrase a number of times this week.  I thought when my mom threw out her Statistics notes from 1982 she had really accomplished something; but then she came across her tax statement from 1963.  That's right, she has hung onto it for for 53 years. It has traveled with her through every move she has had, and there has been a lot of them.

We are close to the end. Well the end of what is in storage. I am dreading learning what she has backed away in this apt. over the last 5 years. I am burnt out, numb and ready to call it quits; but she keeps moving forward.

That is also a phrase that keeps slipping out of my mouth because my husband and I use it as a motivator when the muck gets so deep not only do you loose your boots, but your socks too.

I am not sure how I am going to make it through this week. It's only Tuesday and mom keeps asking if it's Saturday. I guess she is ready to get rid of me. I just have to remember, as hard as all of this is on me, it must be much harder on her.

Lord help me, I may loose my cool before this week is over. I just have to remember why I am here.

When Stubborn Minds Collide

Inevitably there will come a day the person who will be in charge of making decisions and the person having the memory problems collide. The best suggestion I have for you is to bring back up, be prepared to stand your ground and take a walk when you need one.

It is helpful if your back up can make suggestions like, You need to have someone on your accounts because you may need a bill paid and are unable to pay it."  Or "We put our children on all our accounts because it will be easier when we need help." 

It is helpful if you can get them into the doctors office and have the Dr. tell you what is going on with them and that they need help.  Helpful but not easy.  I have been trying to get my mother to sign a HIPPA form so others can know what is wrong for over 5 years. Today, we just made it happen.  My aunt and uncle were there to help push things along and to give my mom a reason to not make a scene.  When you see the doctor,  It is helpful to ask questions to the doctor about options and suggestions.  But you must remember your job is not to save them, but help protect them. I felt so bad for my mom having to be told these things in front of me; but appreciated the respectful and matter-of-fact way he did it.   Needless to say since the apt. was at 8:45am it set a difficult tone for the day; but I knew we needed to use the momentum to ferry things forward.

It is also helpful to ask questions in a way so the staff that can help you, will understand what is going in, and help accomplish what ever goal you have that day. I appreciated the lady at the bank following my lead.
  Q: "If she does not have anyone on her accounts how will they be able to help her pay her bills?"
 A: "She would have to come down with them." 
 Q: "And if she is incapacitated?"
 A "They would have to get a power of atty; but that can take a while and the bills would not get paid."
Q:  "So we can pay to go to an attorney or she can let me sign the card for free?"
  A: "Yes, that's correct."

This was really hard.  She made it known she did not want me taking any of her money. And I let her know, I did not need her money.  I was only doing what her doctor said we needed to do.  It hurt that she would even suggest it; but that is the disease.  I can forgive for such a horrible attitude.

My mom hated this, and was very upset about it, but she hates to make a scene worse than she hated letting me sign the card. Sometimes their fear can be used as a negotiating tool.

Needless to say, I had to bring up the doctors apt. a few times today for her to understand what needed to happen was going to happen. And, there was a moment I went for a walk.  I needed to collect myself and remember why I was doing all of this. But by the time we picked up the boxes from storage to go through tonight, she had forgotten most of what happened today.  She became lost in happier memories and happier times.

Well since I have been up as of 4:45am and it is now midnight I should try and get some sleep.  I have to finagle a trip alone to the car repair place and the attorney's office without my mother being with me. That is going to be tricky. But my sister and I have a plan that should work.

I will be glad if we can still get the POA's; but mostly shocked.

Cruising 7th with Mom

Today was a good day. It's been a long day; but a good day.

Mom was nowhere to be found when we got into town; but appeared to be out with friends. I did not fret too much.  Hubby and I ran to storage to grab a few boxes for him to take back to our house. Then since I could not find mom; we spent a few hours gabbing with my cousins and we  learned a lot about my family. We should really get together more, that was fun.

When we finally located mom she had been out having a good time. I'm glad she was enjoying herself and I am thankful for her friends.  I am certain they are the reason she has made it this far unassisted.

She was of course upset with me for not telling her I was coming. We had changed our minds so many times; I knew she would be confused. Of course that makes me the bad; but she just forgot, and that's OK.

I put my husband to the task of my short punch list and had my him check her internet. As expected it was not working but she did not care and told us to take her computer back home. That's one less bill for me to worry over, so I'm OK with that. The hubby checked the doorbell and discovered the need for a battery and I added it to my to-do list.

After my husband headed home, mom and I after much coaxing from me headed to storage.  I wanted to just take two boxes so not to overwhelm her but she insisted we take more, eight boxes. but it might rain, so it will give us something to do and we wont have to get out in the rain. There are at least ten more to get through, so 8 was a good start.

We ran to Walmart for the battery  and I decided I should see about dinner. She suggested we drive up and down 7th to find something to eat. I giggled and asked if she was going to cruise 7th with me.  She smiled and answered; "I guess I am".  Considering I was forbidden to ever do that, it made me laugh. I love mom when she gets cheeky.

Back at home we watched reruns of The Voice and fixed the doorbell.  She thought it was too loud then asked me to unplug it.  While I was reattaching the outside buzzer, which only took 30 sec., she had forgotten she did not like the sound and asked me to plug it back in. Which I did, but somewhere it is a bit more muffled. I am hoping the sound does not cause a panic because it really startled her.

Later I asked a number of times about bringing in a box from the car to go through. She of course would not let me go get one. I'll save that for after church tomorrow.

I could go into every memory slip or every moment of panic about keys she thought she had misplaced when they were in the ignition, or how many times she became concerned about getting into the storage when I had the key and the code, or every time she did not know what we were getting at the store. But it would be tedious and take away from a beautiful day with my mom.

Overall it was a good day; and these days I take every good one I can collect. 

Her qwerkieness makes me laugh though. She got concerned about a light behind her recliner and once again unplugged her chair and lamp. I asked what she was doing and she said I don't know, saving electric. But tomorrow she will not know why her lamp and chair don't work. Been there, done that and have the retro tee-shirt.

I wonder if it is exhausting to go through what she is. She jumps at the slightest sound and is unsettled easily. I watched her repeatably walk around checking doors and wonder if this is what happens all the time.  I expect I'll need to sleep for a month when this week is over. I know I was ready for bed by 8:00pm, but have too much in my mind.

Thankful to have today with my mom.

21 Before Noon

How is your day going?  Mine began before I even opened my eyes.

The following is the mess that is dumped in a person’s lap when they are having to seek legal custodianship of a parent.  Not that I feel burdened with my mother. Far from it.  I am privileged to be able to help her. The burden comes in the form of the stress her particular situation has left me in. 

I received a call last night from a concerned family member about my mother’s mental state. This is nothing new because I receive more phone calls about my mother than about anything else going on in my life.

But every phone call leads to a phone tree of conversations.  So in my sleep last night I mentally wrote a list of all parties involved and whom needed to be aware of what is going on.

Call Brother and Sister
Call Aunt
Call Cousin
Call Apt. complex
Call Nursing Home
Call Doctor
Call her atty.
Call my atty.
etc.

So I sent two text messages last night and followed up again this morning to my brother and sister.
Then I called my mom's apartment complex they were closed and I had to call back to get a few questions answered about my mother's situation.
Then I called the nursing home and left a message for them to call me back.
Then I called my cousin to let her know I would be in town and what was going on.
My sister called during that phone call so I then called her back.
Then I called the nursing home again and they said they would have the manager call me back.
Then I called my mother’s atty. hoping that it might possibly be likely she could still set up a Trust. (Doubtful but hoping) He has to call me back because he is in court.
Then I called mom's doctor’s office to see if I could get her an appointment so she could sign the papers saying her doctor can speak to me. (The person I spoke to was less than helpful.)
Then I called back my Aunt who called while I was on with the doctor’s office and we coordinated for Monday.
While we were on the phone the nursing home called back so I returned their call. They had not gotten anything from the doctor’s office which led to another call to the doctor’s office.
So then I called the doctor’s office and got a different person and she was willing to make an appointment and get back with the nursing home.
Then I called my attorney and set up another apt.
Then the nursing home called me back.
Then I called the doctor’s office.
Then I called my Aunt.

All of this before noon. All in all, including phone tag, a total of 21 phone attempts and 15 conversations.

What outcome does this leave me with?  The forecast is uncertain.

1 doctor’s appointment that mom and I will have with my Aunt
1 insurance agent appointment
Plans to visit the bank - cancel checks and debit card
Plans to have me added to all her account including bills
Plans to visit the nursing home
Me picking up a letter from her apartment manager
1 appointment for me with my attorney and possibly one for her with her own.

And a whole lot of, Is any of this going to end with her in the nursing home next week and what's next?

How would it be different if she had given me Power of Attorney?  I would call her doctor; we sit down with my mother and we would tell her it is time to go to the nursing home. We would then take time to gather what she wants to take with her; make arrangements and then she would be admitted.

As it stands now. I am going to have to force her to go in and no one is going be happy with that. I wish I could say that days like this are few; but lately I am having days like this a couple of times a week.

So once each of these items have been checked off they will be followed by an if/then flow chart. No matter what though, it all will end in me suing for custodianship because it is just too late for her to legally sign over her rights. That will be the worse day of my life. The day my mother gets served with papers. Everything inside of me would like to not have to be there.  But the daughter in me; the one that loves my mother knows, I have to be there. I have to be there to explain and to cry with her and to tell her I am sorry I am having to do this. I just hope she knows somewhere inside I am doing it out of love and nothing more. 

Fear Is the Mind Killer

One of the things I worry the most about when it comes to my mother having Alzheimer's is the fact she not only lives alone but is still driving.

Last week I received a call from a number I did not recognize so I just let it go to voice mail. I am fortunate that the person left a message.  It went something like this.

"Hello, my name is so and so, I am in Hubbard Texas. I am calling about your mother. At least I hope she is your mother, please give me a call back."

Fear struck me. Had my mother gotten lost?

Well luckily this ended well and he was calling me about an account she has with him.  But I know several whose parents left their home and got lost in the woods and died of exposure, or got in their car and had a wreck.

The next week I got a phone call from my cousin about my mother and the fact she did not have anything in her wallet and was extremely confused.

The same day I ended up speaking with the man that runs the storage facility. My mom thought all her items had been stolen.

Last night my Aunt phoned to let me know that mom really is not doing well that she just does not understand even a simple filing system.

When a parent's memory begins to fail them we hope it is normal. The normal slowing of the brain and its ability to comprehend. When it becomes evident that what is going on is real and is only going to get worse the fear moves from worry about them being alone to worry about how to guide them to safety.

There are many things that can be done. Powers of Atty, Trusts, Wills, but getting a parent that has become paranoid to follow through on these legal documents can be challenging. They become worried they are giving away all power and in a since they are right.  But the alternative is leaving themselves vulnerable.

I wish I had an easy answer of how to go about getting this done. I am navigating these tricky waters and I think the journey is different for everyone.

Doctors and Attorneys can help evaluate and determine the mental status of their client but they do this by seeing them on an irregular basis and only a few minutes at a time. Their opinions legally hold a lot of weight.  But, you as their loved one have to pool all your information from what you see on a daily basis and determine if it falls in line with that of the attorney and doctors.  Unfortunately, it is not always easy to know what to think or who to turn to or whom is right. I wish I could say that what you think matters more than a parent who is losing their reasoning faculties but they don't.  They law hinders a loved one from helping their parent; even if a child sees the need to place their parent in a nursing home. Their doctor will not be able to talk with you without your parent agreeing and an attorney can't really legally help them unless they signed directives before they lost the ability to understand them.

So what is a child to do?  Where can they seek help?  How do they help a parent to understand that it is time to go into a home?  How do they help them understand that what they are doing is because they love them?

I don't have real answers to the questions yet.  I have spent the day on the phone and while I am more hopeful than I have been in a long time. I know there are many days ahead where feelings are going to be hurt.

But the fear holds us all.  Fear kept my mother from preparing for these days.  Fear keeps her not trusting those that love her. Fear of hurting her kept me at arm’s length for a long time. But there is no more room for fear, or tears or hurt feelings. Because now I fear for not only her safety but the safety of others. I fear she will be taken advantage of. I fear we waited too late. 

Perhaps Frank Herbert had it right when he wrote in 1965; "Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me." I admit this quote flows through my mind regularly now days.  It gives me strength to do the things I wish were the responsibility of anyone but me.

And I will let that lead into my next post 21 Before Noon.

Friday Sept.16 - When not to give in

Being the child of a parent with Alzheimer's is a difficult role.  You respect your parents.  You have been honed and conditioned to follow their directives your whole life. So when a parent tells you to let them handle something; the automatic response tends to be to fall in line and do as you’re told.

So...  I walk into my mom's home on Friday and it is 85 degrees in her apartment. Her air conditioning is not working and she is determined not to let us help her deal with it. The hard part was getting it through her head that the temperature was a health concern. She did not want to go to management to have them fix it. She said they would not be there to fix it, she said she wished we would just let her deal with it, she said she did not want us causing her problems, she said we would not understand. She said many many things.

I don't know where the irrational fear of going to the apartment management to fix the problems in the apartment came from; but once my husband put his foot down and told her she could walk over to the manager’s office with us or we would go and talk to her ourselves; she gave in.  She did drag her feet, it took forever for her to find her keys to lock the door. That is typical now days; however, we had to keep reminding her she was looking for her keys. She spoke to every individual and introduced us to each person. After someone told her the mail was already there she went out and got it; but had forgotten why we had walked to the building.

The manager was very understanding and said she would call the maintenance man back to take a look at the air conditioner. I also mentioned something was wrong with the ceiling fan that the chain would not pull to allow it to go on.  She very nicely said she would take care of it.  I told her we were taking my mom for an ice cream to cool off but would be back within an hour.

She had many instances of memory slips while getting ice cream but nothing too concerning or out of the norm for her lately. She was unaware of what time it was even after already being told and there was a conversation about blue ice cream that was repeated a number of times, but these are things we deal with daily.  And, when we got back to the apartment the maintenance guy was there fixing the AC and took care of the ceiling fan.  Things were looking up.

I asked if there was anything else we could help her with and she mentioned she had some light bulbs on the counter so she must need a light bulb replaced. They were 3-way bulbs so I began looking at the lamps. It took me a minute to realize the problem was not the bulbs.

Sometime during my mother's life she developed an irrational fear of storms.  Fearing that lighting would burn the house down.  Now, while that could have happened many many years ago. It hardly happens now.  Yet, mom has an almost compulsory habit of unplugging everything during a storm.   By everything, I mean everything, phones, lamps, all the cords on the back of the computer, everything. We took all the cords to the computer and plugged them into a surge protector, but she does not understand that means she does not need to unplug it. I finally just left the computer unplugged because she would call me weekly telling me it was not working and there was no way to explain to her how to fix it.  So now she is paying for internet, but she can't use it.  But she swears she does not have an internet bill so it's not a big deal. That's not true of course; it is being drafted from her account but she does not remember that.   And so is the problem of having a parent with Alzheimer's and no legal ability to help them.  I can't even call and cancel her internet that she does not remember she pays for. 

Back to the bulbs...

After changing out the bulb I realized the reason the lamp was not working was because it had been unplugged and the cord had been wrapped around the bottom of the lamp. I asked my husband to check the others and every lamp been unplugged and the cord wrapped around the bottom of the lamps. After fixing the lamp I then realized the phone was not only unplugged from the outlet but also from the phone jack. I had tried to call my mother earlier that day and it rang and rang. So the fact her phone was unplugged explained why I could not reach her.

We have trouble reaching my mom by phone most days. Either she has lost her cell phone or the home phone just rings or she turns off the cell and can't figure out how to turn it back on and lately can't remember she needs to charge a cell phone or what she has done with the charger. In fact, she now has 3 cell phones because when she can't get one to work she assumes it is broken and buys a new one.  I asked if she even needed one anymore considering they never work and of course she became defensive that she needs one. But of course it never works; so she is again paying for something she can't use. These are the frustrations of dealing with someone with Alzheimer's.

People with Alzheimer's don't know what they don't know. They can't remember how things work or that they did something and need to undo something. They often think they are fine; they don't see the problems they are having. The ability to understand a situation is limited to about two steps. They don't remember that it is 85 degrees in their home. They will notice over and over again, and check the air over and over again, but they don't get to the next step. To the step where they do something about it. I just happened to catch her in this problem this time. I happen to know this has happened at least twice before and last summer it was days before she had it fixed.

I tell these snipets to help other's understand they need to help their parents prepare for when they might not remember they have a bill that needs paying or one that needs canceling. It is important to help them prepare for the unknown.  It is important that you prepare for the unknown when it comes to your own family.

Exploding Worms

  This  is a post that somehow never got posted...

I had noticed years ago that my mother was having problems with her memory. I of course began trying to coax her into making some choices.

My least favorite phrase quickly became; "What do you plan to do about your mother?"  Her sisters called regularly with concern.  They asked me to call her doctor who refused to speak to me without my mother present.  My mother refused to allow me to attend her appointments. My hands were tied.

I tried to get her to see an attorney about a Will or a Power of Attorney.  She assured me she had and the attorney had everything that was needed. I eventually decided to call him and check.  It turned out the last Will he had written for our family was for my father whom passed in 91' and it was in the form of a Trust.  He said even if he had written one for my mother he does not keep copies older than three years. She would need to come in and start new papers.

No matter what I said to encourage my mother it did not help. She saw me as the enemy and began to accuse me of the oddest things. Stealing her car insurance, wanting to take her money, stealing her TV. Hiding things from her.

It was not long before she would agree to take care of things then either conveniently or on purpose, forget to follow through. I never was sure which.

Next came the anger and the begging. She would tell her friends and family not to tell me what was going on with her. She would say the most hurtful things and tell me I was being mean to her. Me a person who even when I was screaming on the inside never raised my voice to her.

She would refuse to allow me to have contact with anyone that might  reach out to me. She shut me out and I admit after a while, I let her.

I became angry and hurt, she would ask anyone but me for help. But I was thankful for those willing to aide my mother.  I thought surely if it gets bad these people will insist she do something about it. Or, they would contact me.

Well, my mother is stubborn and can be full of pride. Few phone calls came.  Her own doctor told me that he never had to go through a legal custody to have a patient moved to a home and he usually did not recommend one enter a care home unless they had a wreck or set a fire in the kitchen.   But he would never tell me for sure what was going on with her nor would he help me, help her.

I'm still muddling my way through this mess and if I find a way, I'll share it.

So far it is taking cousins and Aunts and siblings to manage my mom to a point that we are finally making some headway.

But legally it is too late. I have no choice but to seek a guardianship. And that is a can of worms with a bomb inside I do not look forward to setting off.

Come back tomorrow for more tells of Delaying Twilight.

Inheriting through the Ink

I learned many things about myself this past week while watching my mom. I have picked up a few bad habits.  Many I plan to rectify.  Such as holding on to stuff that just does not matter, and putting things offer until tomorrow.  I have told my family those habits are going to be deleted from our life. I also noticed that I make the same funny sound she does when I am thinking out something or reading. So not all bad.

I find it interesting the habits we have that are similar because I am adopted. It's obvious I just absorbed them somehow. We use to say they things we do alike were inherited through the ink. That when the judge signed the adoption papers that it was part of the deal. Perhaps that is more true than we knew.

This is a short post because I am home with my family and heading to bed. Tonight will be the first night I get to sleep in my own bed for awhile and I am looking forward to the much needed rest. My son said it shows on my face how hard this week has been. That the dark circles are complimenting the layers of bags under my eyes. Thanks honey.

Anyway, goodnight. Tomorrow is a new day.

Getting Prepared

I can't say enough about staying organized and remaining prepared. 

While you are getting comfortable with your transitioning role, and as the dynamics change in your relationship with your sick loved one, start preparing for the inevitable.

I keep a journal about every conversation I have concerning my mother. It might be about those whom contact me to discuss their concerns; or information I come across such as accounts she has or things she loses.  It's just my way of making sure I don't miss anything. I expect at some point in time, these notes will help others to understand why she needs the help she does.

They also help me. They remind me why I need to be diligent in my pursuit to help my mother even though she does not see the need for it. I find my journal especially helpful on the days my mother lashes out at me and accuses me of stealing from her. I understand why she is the way she is; but it does not keep it from hurting.

Things I wish I had done: I wish I had copies of her Medicare Card or Driver’s license, or bills or bank statements, because it will take a while to pull all this information together. I say it will take a while because with my mother’s decline she has started hiding things and loosing things.

She cannot find her driver’s license, her Medicare card, her check book.  These things I worry may have been stolen or simply misplaced, but I have no idea if someone has access to her information. She has accused us of stealing her auto insurance card, her keys, her cell phone, TV.

So I journal to remind me how bad things are with her.  I journal to document current dilemmas. I journal so if someone questions what is going on with my mother I can show them.

I journal because there are days it is my only outlet...

WHY, Because...

I know many will ask "Why?” Why would I start a blog about my family dealing with my mother's Alzheimer's?  Why would I want to put our personal life out for public review? Why would anyone else care about what we are having to endure? Why, Why, Why?

The answer I have is both selfish and selfless...

Because I need a place to let out all I am feeling; and because I know I am not the only one having to face this same situation and they need to know they are not alone.

I have learned so much about this process and still feel like I know nothing. Every person's experience with Alzheimer's is different. I would love to be able to say; everything is going to be just fine. Everything works out for the best; and doing the correct thing is just part of dealing with Alzheimer's. The truth is; no one gets out of this unscathed.

Those who have the disease become angry, paranoid and lost. Those that love them become hurt and frustrated.  Roles reverse, the sick can no longer make decision for themselves.  The young have to take over for their parents.

Some people are willing to accept what is happening to them and prepare for the inevitable. I expect some of those people typically are still married and have a partner willing to push things along.  They take care of  Power's of Attorney, Wills, and plans; yet when the time comes they lean on other's to help.

Other people early in life make decisions that protect them later in life. These are very proactive people who believe in taking care of their responsibilities.  They don't want to be a burden on others and they don't want others making choices for them before they are ready.  These people will contact an attorney and have the necessary forms drawn up so not only their own lives are protected but those of their descendants as well.

But what of those who do not live with a partner to help them make decisions?  What happens when a person lives alone and their mind begins to slip?  What happens when a person is very private and secretive? Those people and their families often find themselves in an uncomfortable situation. There may come a time when the family is faced with a decision to remove their loved ones rights.

Eventually, most people with Alzheimer's have a tendency to become paranoid, and difficult. They feel like they are being lied to, stolen from and their freedoms taken away.  There is no easy way to rationalize with them.  They can't remember from minute to minute what they have agreed to and what they have not. They become very vulnerable and that is when the family must choose to step in and take over.

Hopefully somehow families managed to be able to prepare for this time so that transitions are easier for all involved.  But what happens if the person with Alzheimer's refuses to give up control and refuses to protect themselves and their loved ones?  That is when the family must sue the person for the right to manage their affairs for them.

This is why it is so very important that families talk about the stuff no one wants to ever discuss. This is why powers of attorney both medical and business must be signed.  No one wants to take a parent to court, to serve them with papers that say they believe the person is no longer capable or trustworthy with their own affairs. But that is exactly what will have to happen. In order to be able to enter a parents place of residence, pay their bills, turn on or off the electricity, manage their life insurance, sell their car; a Guardianship must be established and if that was not done via a Power of Attorney, then the court system is the only way to gain those rights.

So here I sit; blogging about the worst decision I have ever been faced with.  Do I serve my mother with papers to remove her rights to manage her own life?  And the only answer I have is; she has given me no other choice. Even if she was to say today she wants to put herself in a nursing home; I still could not pay her bills or manage her affairs legally.

I have spoken to family, and we all agree it's time. I have spoken to doctors, to lawyers to nursing homes, to insurance agents, to anyone I think might possibly lead me to any other recourse. Every conversation leads me back to the same conclusion. I just have to buck up and do it.